Tuesday, May 3, 2011

Recently I visited with family members living in San Francisco for treatment of a son’s chronic Lyme disease. Refused diagnosis in Alberta, their son Riley got so ill that he and his mother had to move to the US to try to get his health back. A desperate measure, but when the door slams shut on therapy in Canada, there’s only one choice left.

As it turns out, my relatives had joined western Canada’s growing Lyme-leper colony in California. No one in public health up here bothers to notice how big this exodus is – when it comes to Lyme, they prefer to let sick dogs lie. But in San Francisco I learned there’s a whole clutch of Calgary families there buying their Lyme-care. And we can be sure there are Edmontonians and Vancouverites too, because Canada’s refusal to treat people infected with Lyme disease is as universal as our healthcare system.

Young Riley is one very sick boy, having picked up three nasty infections from a single tick bite. This is increasingly the case in Canada, but it wasn’t detected at home – Alberta relies on a faulty Lyme test and doesn’t check for co-infections. We could, of course, decide to improve our shoddy testing, and help our doctors learn to diagnose Lyme from symptoms, but that would require a clear commitment to combat tick-borne infection. Right now, that’s not a public health goal anywhere in Canada.

As a result of Alberta Health’s failure, Riley is now immobilized in a far-away bedroom in San Francisco, where light, movement and sound can be closely controlled. Lyme invades the brain and disrupts the limbic system, making external stimuli painful and disorienting for patients. So Riley is sequestered from people and sound much of the time.

This is a bedroom where he’s tended lovingly by his nurse-mother Christine, for long hours every day. A bedroom he only ever leaves laboriously and briefly, occasionally in a wheelchair for visits to his doctor. A bedroom that’s really now his entire world, in a relative’s house, where family and friends visit in order to help keep hope alive.

Riley was brought to California to be close to his Lyme-literate MD because he’s far too sick to commute from Alberta for appointments. He also needs constant monitoring for his reactions to medications. There are no LLMDs anyone’s aware of in Calgary, nor would one, if s/he actually existed, be allowed to treat chronic Lyme disease in the ongoing, exploratory ways needed.

Riley has a PICC line in his chest to receive the IV antibiotics, antimicrobials, and supplements he needs to clear infections. His digestion is highly disrupted, so he takes his food in liquid form, as smoothies that Christine makes and feeds him, slowly, using a Dixie cup. The medications make him very ill with serious Herx reactions (mass die-off of bugs). Obviously it would be far better if Riley could get his care in Alberta, from local docs, under public health insurance.

Typically, a Canadian doctor known to treat any amount of Lyme disease in any province attracts the unwanted attentions of the local College of Physicians and Surgeons. It shouldn’t, of course, but the behind-the-scenes threat is loss of license. Prescribing open-ended antibiotic therapy would also bring down a posse of Infectious Disease Specialists, whose true specialty seems to be blanket refusal of antibiotics for tick-borne infection (‘self-limiting diseases’ in their 1984-speak).

Like every Canadian Lyme-victim, Riley has an abstract ‘right’ to receive ‘medically necessary care’ for a treatable illness – he’s an insured member of our mandatory healthcare plan. But Canada and the provinces have adopted American ‘practice guidelines’ that effectively de-insure Lyme disease, completely trumping that right. Mandatory inclusion turns into total exclusion from benefits.

Riley did eventually get tested for Lyme in Alberta, and of course he was negative (isn’t everyone!). And under the U.S. private-insurance-company standards that rule Lyme diagnosis in Canada, that test result ‘proves’ he doesn’t have Lyme. It’s bizarre that a test with at best ‘coin-toss diagnostic utility’, that likely misses over nine in ten cases of Lyme, would be relied on to deny it definitively!

Yet Riley did in fact have Lyme and eventually got the serology to show it. But it was delayed a long time, because doctors were disinclined to test him at home, believing firmly that ‘there’s no Lyme disease in Alberta’. As none of these doctors had any clinical knowledge of Lyme, in the end one defaulted to the flawed test to rule it out. And by the time Alberta Health got around to doing this, the bugs had become chronic and colonized much of his body.

More reliable testing, purchased later in the USA, showed him to be positive for Lyme, as well as having Bartonella and Babesia. In other words, ‘better diagnostics’ revealed an all-out assault on Riley’s immune system that was carelessly missed, and glibly dismissed, at home. Another Canadian patient with multiple infections doomed to endure a wasting disease due to complacency in public healthcare.

Note that across Canada, if your step-one ELISA test reads negative, you don’t have Lyme, period. Ergo, you must have something else. Often it turns out to be something fuzzy and untreatable, like an ‘idiopathic’ eating disorder (which ‘explained’ Riley’s thirty pound weight loss); but just as likely, the doctor who says ‘we don’t have Lyme in Alberta’ decides quite arbitrarily that the problem is really in the patient’s head!

It’s funny how so many formerly healthy people, who one day mysteriously begin deteriorating and have the clear feeling that something’s running amok inside, are quickly deemed hypochondriacs by doctors unqualified to make such a diagnosis. And it’s perverse that a lousy screening test allows them to slam the door on more constructive explanations.

Dr. James Schaller, a specialist in tick-borne infections, says of this test: “if your clinician wants to first use an ELISA, simply run! To put it bluntly, the ELISA test as a screening tool is useless…” He continues: “many labs use inferior test kits that are so poor that they miss patients who present with obvious bulls-eye rashes and clear Lyme symptoms.” He’s speaking about the USA, but Canada relies on the same flawed test to definitively rule out Lyme disease – and we’re very good at ruling it out!

Even with clear evidence of Lyme from an Igenex ‘best-practice’ Western Blot, people like Riley are denied all treatment in Canada. Just like private U.S. insurance companies, our governments refuse to provide any therapies for chronic Lyme disease. They just withhold antibiotics and leave you to rot.

Indeed, public health officials line up squarely behind the Infectious Diseases Society of America in denying there’s any such thing as chronic Lyme disease (an irrational idea without scientific evidence). So Riley’s family, like hundreds every year, learned the hard way that Lyme disease is Canada’s first fully privatized illness. And like lots of other western Canadian families, they faced the wrenching choice of travelling (in their case moving) to San Francisco – where they may not leave their hearts, but will definitely leave bags of their cash.

One day I watched nurse-Christine order drugs and supplements following a visit to Riley’s naturopathic doctor, and carefully create a written schedule for his daily IV drips. This process took over a day to complete, with goods arriving in boxes via courier the next day. She’d done a lot of comparison shopping to try to keep prices down. Still the cost, for what would partially cover a couple of weeks at best, was way over a thousand dollars! That’s fiscal reality in Lyme-leper land.

San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.

I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.

If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada).

Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.

Riley had 42 symptoms of Lyme disease listed by the second set of practice guidelines – but these symptoms aren’t accepted for diagnosis in our monolithic healthcare system. None of his 19 Alberta doctors recognized them! There’s just one diagnostic symptom allowed under IDSA guidelines, and most people never have it. So it’s too bad, so sad – now get lost!

This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.

Riley’s illness was allowed to run rampant due to Alberta’s complacency and the failure to get a couple of hundred bucks worth of antibiotics into him pronto. Now he needs tens if not hundreds of thousands of dollars worth of them suffusing his pain-wracked body indefinitely. And with uncertain outcomes!

Cost of care, ballpark, in San Francisco, with the LLMD, naturopath, rolling tests, antibiotics, pro-biotics, homecare nurse for IV cleansing, and assorted therapies, could be as much as $100,000 a year. Easily that much if we allow for lost income for the nurse-mother, or place a value on her 18-hour days. Then there’s rent in San Francisco for most people, often living alone in some grubby flat.

During my stay, I boned up on Lyme when I wasn’t chatting with Christine about the formidable challenges of nursing her boy back to health. I read essays on different approaches to treatment by doctors of varying backgrounds, full of insight into ways of defeating a cunning pathogen and its many manifestations. Pattern recognition is vital in treating complex illnesses, and it only comes from clinical experience. I was impressed by the breadth of experience of doctors who do treat chronic Lyme disease, and aghast that we’re doing nothing to transfer their knowledge into our Canadian medical toolbox.

Riley’s Lyme disease is strongly neurological, and he has co-infections, which requires different approaches than if he had arthritic Lyme and no co-infections. His is also chronic, meaning it was allowed to disseminate. Early on, when the Lyme spirochetes are mainly in the blood, they’re much more treatable than when they spread to organs and remote tissues. They then take persistent forms that evade detection and are more resistant to antibiotics.

Everything in the literature emphasizes the complexity of dealing with chronic forms of Lyme; all evidence reinforces how vital it is that we catch Lyme and the co-infections early and hit them hard with antibiotics. This is pre-emptive public health policy that would cost peanuts to enact but would reduce suffering and debility immensely. Greedy insurers may not wish to do this, but there’s no such motive in a public health plan where risk is pooled and early intervention is the mantra.

‘Interesting’ is too neutral a term for the agonies inflicted by these terrifying diseases. The cost in individual lives of missing the opportunity to pounce when they first occur is incalculable. Canada’s indifference in light of the mounting evidence before government is inexplicable and outrageous. It completely violates the spirit and intent of the Canada Health Act’s commitment to all Canadians. And it violates a Charter right to security of person.

Recently, Lyme-activist Gwen Barlee released a confidential report by Dr. Brian Schmidt of the BC Provincial Health Services Authority. To his credit, Dr. Schmidt acknowledged that patients are being abandoned by practice guidelines that rely on poor testing and arbitrarily limit treatment to a short course of antibiotics. Even if an absolute cure for chronic Lyme is elusive, resolution of symptoms and return to an active, independent life is achievable for most.

Dr. Schmidt’s report outlines a positive direction for Lyme disease diagnosis and treatment that would re-open the door to medically necessary care for infected British Columbians. Prior to travelling to California, I’d begun urging our Liberal government and NDP opposition to move forward on these progressive recommendations. The opposition appears open to these changes, which is very encouraging. We’re still waiting for word from government.

I reread Dr. Schmidt’s report carefully while with the Lyme-lepers in San Francisco. It offers hope for a return to an ethical compass in public health policy on tick-borne infections. It provides a direction for addressing and preventing an untold amount of human suffering. Being with Riley and his mom, seeing their struggle firsthand, resolved me more than ever to agitate against a status quo that de-insures Lyme disease and denies ‘medically necessary care’ to people with tick-borne infections.

I’ll have more to say about Dr. Schmidt’s recommendations in future posts, as they deserve a much fuller public airing than they’ve had to date. In the meantime, consider this reality: every day Lyme diagnoses are missed all across Canada, generating new victims who’ll ultimately be forced to seek treatment in a foreign country and pay out- of-pocket. Some of them will become so sick they’ll have to go and live there. Many simply won’t be able to afford that choice.

So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it. We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.

There are many good reasons to visit San Francisco. Lyme disease should never be one of them.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.

David Cubberley

I'm a community activist and have worked as both a Saanich Councillor and a Member of the Legislative Assembly for Saanich South (where I served as provincial Health Critic and first learned about Lyme). I advocate much-improved diagnostic and treatment protocols for Lyme and its co-infections, and for clear recognition of Lyme as a chronic, treatable disease. I also lobby for doctors to be informed not to rely on current Lyme testing, which is faulty but often used to rule out Lyme and withhold treatment. I have been serving as BC Director of the Canadian Lyme Disease Foundation (CanLyme)since 2009. Much information and advice about this complex and troubling disease is available at the CanLyme website: http://canlyme.com/. To arrange for public presentations on Lyme disease and public health, please contact me at: spokesman@telus.net.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.